Coping With Glioblastoma: A Study of Communication Between Physicians, Patients, and Caregivers

Active, not recruiting

Interventions: Behavioral: psychometric tests, questionnaires and neurocognitive assessments

Brief Summary: The purpose of this study is to learn more about the way physicians communicate with brain tumor patients. This study will look at how oncologists provide information about brain tumors, brain scan results, and treatment options. This study will look at how oncologists provide information about brain tumors, brain scan results, and treatment options. Ultimately, the investigators hope to use these findings to improve communication between patients, caregivers and their doctors.

Recruitment & Eligibility

Inclusion Criteria

Patient Inclusion Criteria:

18 years or older
Pathologic diagnosis of WHO grade IV glioma, as per MSKCC medical record or outside medical record.
In the judgment of the consenting professional, proficiency in English that will allow the participant to be able to complete study questionnaires and assessments. Many of the study assessments are available only in English.
At the time of consent, orientation to self, place, month and year

Caregiver Inclusion Criteria:

18 years or older
Identified by the patient as a relative, friend, or partner with whom he or she has a significant relationship and who provides him or her informal (unpaid) care (i.e., physical or emotional assistance).
In the judgment of the consenting professional, proficiency in English that will allow to complete study questionnaires and assessments. Many of the study assessments are available only in English.

Oncologist Inclusion Criteria:

Exclusion Criteria

Patient Exclusion Criteria:

A patient will be excluded if in the opinion of his/her attending neuro-oncologist or the covering neuro-oncologist, he does not have the capacity to consent to the study based on clinical evaluation
Aphasia precluding comprehension and verbalization of consent to participate, in the estimation of the attending physician.

Caregiver Exclusion Criteria:

Arm && Interventions

Group	Intervention	Description
Physicians, Patients, and Caregivers	psychometric tests, questionnaires and neurocognitive assessments	This is a longitudinal study of patients with GBM with recurrent or multi-recurrent disease as determined by their neuro-oncologist (on the basis of clinical and/or radiological findings). Patients will indicate a single caregiver who will consent separately and perform separate assessments. The study assessments will evaluate the content of the discussion in which this change in disease status was communicated, as well as include patient-reported and caregiver-reported outcomes. We intend to accrue 160 total participants (80 patients and 80 caregivers) with complete post-discussion visit follow-ups over 18-24 months.

Primary Outcome Measures

Name	Time	Method
number of responses from caregivers to 3 yes/no questions	2 years	The curability of the patient's cancer (curability) The patient's prognosis (prognosis)The patient's goals of care should his/her condition worsen and he/she becomes critically ill (EOL)
number of responses from patients, to 3 yes/no questions	2 years	The curability of the patient's cancer (curability) The patient's prognosis (prognosis)The patient's goals of care should his/her condition worsen and he/she becomes critically ill (EOL)
number of responses from physicians to 3 yes/no questions	2 years	The curability of the patient's cancer (curability) The patient's prognosis (prognosis)The patient's goals of care should his/her condition worsen and he/she becomes critically ill (EOL)

Secondary Outcome Measures

Name	Time	Method

Locations (8): Memorial Sloan Kettering Commack
🇺🇸
Commack, New York, United States
Henry Ford Hospital
🇺🇸
Detroit, Michigan, United States
Memorial Sloan Kettering Basking Ridge
🇺🇸
Basking Ridge, New Jersey, United States
Memorial Sloan Kettering Monmouth
🇺🇸
Middletown, New Jersey, United States
Memorial Sloan Kettering Bergen
🇺🇸
Montvale, New Jersey, United States
Memorial Sloan Kettering Cancer Center
🇺🇸
New YorK, New York, United States
Memorial Sloan Kettering Westchester
🇺🇸
West Harrison, New York, United States
University of Vermont Medical Center
🇺🇸
Burlington, Vermont, United States